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Hello.

I'm InYourHead, and I would like to welcome you in MY head.

Please ask questions >.< Or comment. I don't care, just comment anything! lol I don't get offended by honesty.

My dx is Bipolar I, then was discovered I was am an Aspie also. I am taking 150 mg of lamictal daily starting 2 months ago. My APRN and PhD psychologist both noted, after being heavily treated for mania, that my nonstop talking wasn't mania, it's ASD. It explained my entire life. It is possible I may have a personality disorder as well, Borderline Personality Disorder, but I'm not too sure that my symptoms are of that, or ASD, including self injurious behaviors. Could be both or either or. I appear to be suffering from depression, despite the meds. I was told that this is because my depression is circumstantial. I don't know. Maybe this is correct.

I will briefly explain some of my childhood -- I was never accepted by peers, starting in preschool to this current day. I was moved up in grades because they thought I was acting out due to boredom since I knew the entire year's worth of classroom material. I was heavily bullied and honestly, I feel like that is why I was acting out. I hated public school, and wished my mom would have homeschooled me. That was NOT the type of peer interaction I needed. It taught me nothing, other than to hate myself for being different. I tried to fit in, even with the aspy nerds, but was too different, even for them. I didn't LOOK like there was anything different about me from the outside, but it became quite clear I was "off" from a few moments into any conversation. I got picked on so much for being weird. I was beat up regularly later in Jr. High and high school, and outside of class, like walking down the side of the street. I was beaten to unconsciousness twice in my life. I moved out on my own when I was 14, dropped out, and worked full time. I took a GED prep class, received a letter of recommendation from a wonderful teacher I had there, and somehow, I managed to get into college at 15 years old. My life definitely got a LOT better.

I spent 8 years in college studying psychology. I spent the last 3 studying autism and evidence based psychotherapies. I became obsessed with neurobiology. I am an Aspy who has behavioral issues but am very inclined with school work -- generally, a straight A student, and I like stats (I scored over 100% on every exam) -- I know, I'm weird. I worked with grad students and did directed studies related to some of my theories about autism -- in relationship to personality disorders, and to music, to be specific. I was even employed doing grad level statistics and at one point, had my own office on campus. Cool, right? Sadly, the only degree I have is an AA. I became pregnant, was told if I kept my baby, I'd have to do it alone (and so still to this day, I am doing it alone completely) during my semester I was to graduate. I walked with a big pregnant belly at the commencement ceremony and graduated on the dean's list. I had no idea what I was in store for next...

My daughter has a dx Autism level III, and is 4 years old (dx at 2 years old, early intervention started at 18mo.), is currently in a SPED preschool. She is non-verbal, and has profound SIB meltdowns where she really hurts herself biting herself and scratching to the point of drawing blood daily. I hardly remember experiencing this in my childhood, but I am told I went through similar things, to a much less severity level, however. She is a runner, very fast, and tries to bolt into streets (she likes cars). She does not have very good fine motor skills and requires constant supervision and assistance like she is still an infant (tries to eat non-food objects still and uses her mouth to explore things). She does not play with her toys for more than a mere second and then throws them on the ground, pretending they were never there and trips over them. She does not feel physical pain like even us Aspies. She really hardly feels pain at all. She went through severe regression, where we almost thought she would develop more typically (she was saying words, pointing, etc. before 12 mo. old), but it just went backwards, and backwards, and more backwards -- and then she became crossed eyed too. You would think that because I am also on the spectrum that I would understand, but I do not always understand. I understand more than anyone else, and we have a very special relationship. Sometimes she triggers my triggers, and I trigger her triggers. The good thing is that our sensory processing differences, from NT people, are largely the same. I am a much better OT than SP. I seem to have this almost psychic connection with my daughter as a result of her and I being so uniquely similar on that.

I insisted this must be more than "autism." Her blood work (consistent high THS) and MRI that I demanded for revealing a pituitary tumor, suggest Cushing's Disease, on top of autism. She might also have Prader Willi or Engleman's syndrome. I won't know until I actually make the appointment to get the genetic test we already have a referral for. I just finally scheduled with an endocrinologist. That was hard, IDK why. Her auditory test revealed a "robust" auditory nerve, so she hears too well, just doesn't understand or respond very much to spoken words. She mainly just hears cadence. Her eye refraction under sedation revealed a profoundly blonde retina. Her having black hair to brown to red to dirty blonde, then platinum blonde over the course of two years, also suggests Prader-Willi. She is very indiscriminate about what she will eat, meaning almost anything, always wants to eat. All the signs she knows are related to eating, and she also picks at her skin, scratching as a tick.

I suffered through horrible postpartum depression, dealt with so much stress while pregnant, spent most of my time researching how to be a perfect mom, or what I thought that meant at the time before I dived into evidence based, peer reviewed research a couple years later. I refused to vaccinate, still haven't (I know, shame on me, right?), ate as much organic food as possible, blah blah blah. Clearly, I no longer believe vaccines cause autism, but I question if my mental health had anything to do with it. I did not talk much the first year of her life, if at all. I kept all the dark curtains closed, rarely turned on lights, rarely did anything other than pace. I tried to study, but I could no longer proficiently. My daughter acts like this very much so now, a pacer she is. I spend every night in a self-created hell blaming myself for all of this. I felt very alone with an infant who had "colic" like behaviors (turns out, it was autism all along). I was literally alone, completely, even though family lived nearby, no one came to visit. I was very poor. I sold everything out of my house, and a sentimental necklace off my neck, when I could no longer afford rent and left to a different place across a small ocean where the rental prices were half of what they here. I lived there for 3 years, met my exboyfriend after I lived there for 6 months. I still lived alone in the woods, and rarely went out much. I don't think the relationship was good around my daughter, so I left, and also to get us better services, and came back to where I was from.

My bipolar dx came after I had an abortion this past February, one I intensely regretted and did not want to do, but I did not believe I could have a baby and be a mommy to my daughter given the severity of her symptoms. I need to be a full-time OT and SP to her, and because of her bolting behaviors, I knew I would never be able to carry an infant without risking my daughter getting hit by a car, etc. I was engaged to be married, but that was quickly called off because I had the abortion. Sooo... I broke down. I probably should have been hospitalized, but I wasn't. I took a break, and then moved a couple months ago closer to family. where I could get better mental health services (that worked out mostly), and I thought better services for my daughter, which actually they don't have here. It's hard enough having the symptoms I have, and then throw my daughter's meltdowns on top of that -- oh god. Her scream is so loud, it echos through my ears even when she isn't screaming.

I know the basis for autism is largely genetic, however, I still blame myself because my intuition tells me that is not a sufficient explanation.

Some advocacy groups see me as a martyr mom. I really hate this, and find that term to be demeaning and dehumanizing. I do have a lot of empathy for my daughter. We wouldn't have the special connection we do otherwise. She is mainly a happy girl, and even after a meltdown, will kiss me and hug me, even if I also got upset. She is very forgiving, even when I don't feel I deserve it. I wish I could paint a happier picture because we are both airheaded happy go lucky people by nature, but she and I both have intense dark side's as well. I will say that I only had one semester left in college to get my BA, but I had to take a break to deal with my mental health and my daughter's therapy, AAC, and medical issues.

I will post my concerns in the appropriate forum for parenting, and my concerns with advocacy in the advocacy forum. If you are interested in me (I'm not), or my daughter's story, please look out for my future posts. I would like to also start a blog.

Tonight, in particular, I am feeling very sad, remorseful, and like... I'm on the wrong planet. How do I communicate I am a mom on the spectrum and that my daughter is too? Most people have heard of autism, but even other autistic people don't have a clue what it's like to be more on the severe end of things, a reality that exists where the child may never develop communication skills -- a very dangerous thing. Anyway, I think I got it all out here.

I would really like to hear other stories and make friends on here. I know I'm a bit of a nut, and not as cool as Aspies who have more interesting obsessions and talents, but hey, I love neuroscience and anthropology, I could talk up a storm about either or. I used to play piano and paint, but depression got in the way of that...that and I gave my keyboard to my ex's teenage daughter who secretly hated me (only like any teen would, I expected this but hoped I could be friendly enough that she would like me). I still send her bday gifts and stuff, but apparently she doesn't even want me to come visit... But hey, no one likes a martyr and I shouldn't have done that if I were to complain about it later. Just thought that by now (October, holy ****) that I would have made money and been able to buy a new one. Nope

My daughter is my whole world now. I work 2 jobs and just got our own place. She does get SSI, and I get some help, and we are still very, very poor, but we are together, we have everything we need (I spend all my money on new things for her, shoes, books, clothes, OT stuff like a custom weighted vest, etc.). Seems like I am really rubbing others with ASD the wrong way though. I hate this. I can't even make friends with my "own kind," so to speak.

Anyway, I hope to connect with someone and make a friend or two, or a few. Who knows.

I am bipolar and de facto autistic: I also am 81 and completely alone except for a dog and and instrumental ralationships (shop keepers) .I was moved by your post . I would like to be helpful. And put down my story but perhaps later. Today, being Sunday, the worst day of the week, I am in bad shape.
I live in Europe. Once I posted frequently in WP.

Thank you for responding. I would really love to hear your story... please come back and share, or link me if you start a new thread?

Hey InYourHead welcome.

I found this beautiful and correct:

"How is it that we can be so gifted,
Yet so challenged at the same time?
We see the details others don?t,
Yet can?t seem to find the right wordsOr ever be sure of what to say,
Sometimes, because of this,
Life becomes nothing but a struggle. Whether it?s a struggle to physically speak,
Or a struggle to interact,
It takes painstaking work for many of us,
To get even halfway close,
To appearing ?normal.?


Sometimes when this struggle drains us,
Others judge us for being weak.
They tell us to just ?toughen up?,
?To get over it?,
And everything will be Okay.
It?s as if the better we do,
The more people forget,
Or don?t register,
Our challenges.
How ironic it is
That we should become the victims,
Of our own success."

from somewhere

As about me I sometimes feel exhausted for the effort to appear normal.

Welcome to Wrong Planet!

Thank you for sharing.

On a less related note and not the sum of what I gathered from reading that are that these words are also reminiscent of why I don't qualify for services, like case management, for myself. Because my GAF (global assessment of functioning) score is too high from being articulate and well spoken, all of my other issues are masked. I can hardly remember to eat or brush my hair. Not because my focus is entirely on my daughter most of the time, which it is, but because I just have a hard time taking care of myself. I always considered putting myself on a schedule/routine would fix this, even before I ever thought I might be autistic or knew that was a specific strategy that helps us. Problem is that I can sit there and write it up, but I seldom follow my own advice.

I too, am exhausted, of trying to appear normal. I'm ready to just enjoy my time alone and stop looking for IRL friends. I am getting too old to be so concerned about those types of relationships. I always wanted just ONE relationship with someone I could trust. Didn't work out, and I don't want it to work out now. I don't even care for nor desire it anymore. I prefer my own space and peace of mind. It rings bells of freedom for me, as well as ensures my daughter has more of my focus, which, clearly she needs badly. I am her one to one person.

I can't say I read all of the details (the DSM-5 type 6 GDB with a side of Fries stuff just overloads me...I don't know what it means. ), but did get enough to see it has been a very rough stretch for you. Having these conditions and now being the parent of someone with some is kind of a double whammy.

I don't know, but just had a feeling that while making your child your prime focus and in a sense life's work is good to a point, I don't think one should neglect your own life completely doing so. One reason is that one day the child will reach adulthood and you don't know yet what that will mean. Another is its pretty impossible to predict how it will turn out as far as the child's capabilities.

I can't say how one does both. Its more just a sense of keeping one's options open and not basing all decisions entirely on 'what's best for the child'. You also have to consider what's best for you and find a balance. You are equals, each with valid needs and you should allow yourself hope.

Welcome to Wrong Planet!

I live in a soap bubble. I can live only inside it. Each outing leaves me davastated. Going back to my bubble, I find it destroyed, it takes time fo reconstruction. And I realize that my self outside the bubble has been a fraud, a performance, a constant lying.

I did not reproduce, nor I have meaningful kins. I can only read and think, and perhaps write, if have time. (not much).

Last edited by paolo on 20 Oct 2014, 6:29 am, edited 2 times in total.

welcome.